Embarrassed by MG Speech Struggles
Myasthenia gravis (MG) speech troubles cause me embarrassment, frustration, and depression. Trouble speaking from MG can contribute to a lower quality of life, whether it gets in the way of our interactions with others or we avoid social activities.
Situations when I commonly struggle with my speech
When I finally see someone and talk a lot
I get excited when I finally see someone for the first time in days and I talk their ear off. For the first year and a half after my diagnosis, and during my thymectomy recovery, I was too weak to drive. I would only have the chance to see friends when my family could drive me on the weekends when they were off work. Unfortunately, when I am talking non-stop, my voice gets fatigued within minutes, making it difficult to move my mouth and tongue much to form words.
Speaking to strangers and social anxiety
If I am speaking to a stranger, my social anxiety is almost always running high. This causes my speech problems to happen rapidly, sometimes with the first words out of my mouth. I stutter from the nerves and feel like I am tripping on my words.
Being out in the sun
I am a chronic bad-wearer of sunglasses and typically do not have a pair with me. However, I could use sunglasses when talking to others in the glaring sun, especially when they're a stranger or if we've only spoken a few times. My eyes are sensitive to light, and the bright sun makes it difficult to focus on the conversation. My voice starts to get shaky from my nervousness because I will forget and remember thoughts randomly.
Brain fog and speech difficulties
Sometimes my brain fog makes it difficult to form concise thoughts. I get stressed and nervous when I cannot remember where I am headed with my statement, or can't even remember the topic of conversation. The unease and panic that sets in makes it a struggle to get the words to form and come off my tongue. I start tripping over my words while attempting to correct my mispronunciation.
The pressure of representing by business
When representing my businesses, I am usually in situations that are out of my comfort zone because I am an introvert. When people approach me while I paint outdoors, I am already shy about their thoughts about my painting. When I am at a craft show with my jewelry, I am tense about representing my business well. So when people ask questions, I get more overwhelmed every minute. I start slurring my words and I struggle to get them out correctly - my speech starts to transpire.
The emotions and worry that comes up during conversation
I worry my speech problems impair the message I am trying to get across during conversation. Was the person I spoke to too distracted by my slurred speech to focus on what I was saying? What did they think when I corrected myself or paused to get the words out? Was my speech too broken up to make out enough? Did they understand me? Did I sound unprofessional? I try not to consider these concerns during conversation, but it isn't easy.
Sometimes when I paint in public, people ask me questions that catch me off guard regarding how long I've been painting professionally and if I went to school for art. These types of questions often set up the conversations for me to mention MG because it changed my career from archaeology to art. The emotions are usually different each time. But when I am caught off guard by unexpected emotions, I get a trembling voice involving a stutter and sometimes I hold back tears.
Tips to minimize MG speech problems
Although MG speech problems can cause embarrassment during conversation, we do not have to accept this as an excuse to avoid participating in social events and gatherings. Here are some tips I recommend to help manage speech difficulties. These tips have helped me gain control over my voice and respond to the situations that trigger my symptoms with more confidence.
Choose a job that avoids a lot of discussion
If you have the opportunity, working a job that involves minimal conversation with others, especially not with clients, is ideal. A remote job would also be an ideal choice.
Face away from the sun
Suppose someone starts speaking to you while out in the sun; face yourself away from the sun. Feel free to ask the other individual to pause and resume the conversation indoors or where there is shade.
Focus on listening
During conversation, concentrate on listening to the other person rather than ourselves and what we just said or want to say. In my experience, this allows speech to flow without as much nervousness. And it allows the other person to talk more so I can rest my fatigued voice.
Take pauses
When brain fog and speech issues occur at the the same, it can get in the way of conversation, causing us to forgot a question or topic. This can make us feel more frazzled and worsen our speech. It helps me to take pauses while I speak and remind myself (in my head) of the question I am responding to and the general answer I want to get out.
Set your boundaries
If speaking about your MG with other causes you too many emotions and discomfort, do not feel you need to justify your speech difficulties. Most individuals will not ask about speech impediments or conditions. If they do, politely define your boundaries of what you're comfortable sharing and divert the conversation elsewhere.
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